Phoenix Rising Board Statement Re: Cort Johnson’s Announcement

December 30, 2012

The Phoenix Rising board members are all extremely sad to learn of Cort Johnson’s decision to leave Phoenix Rising. Cort’s writing, and his vision of a rich and reliable website as a resource for ME/CFS patients, are what attracted all of us to volunteer for Phoenix Rising, and the board is determined to maintain the aims and principles of the organization which he established. The Phoenix Rising board wishes to thank Cort Johnson, as the founder of Phoenix Rising, for his hard work and tireless advocacy for ME/CFS patients, and we wish him all the best in his future projects.

Until Cort notified us on December 24th of his plans to launch a new website, we were under the impression that Cort would be continuing to post articles for Phoenix Rising according to the arrangements we had agreed with him in recent months. Unfortunately the board has not been able to meet during the holiday period due to family commitments and illness and as a result we are not able to respond at this time to all the questions that members are understandably asking. We deeply regret that this has meant that the manner of the announcement of Cort’s departure from Phoenix Rising may have caused confusion and concern within the Phoenix Rising community. The board will be meeting in early January to prepare a further statement, which will focus on the future priorities we envisage for Phoenix Rising as we all aim to move forward positively in the New Year.

A number of members have asked questions about various financial and organisational matters. The board would like to state clearly that our goal is for Phoenix Rising to have full financial and organizational transparency. As a part of this goal, we are currently searching for additional volunteers to help with Phoenix Rising’s operations, and in particular we are looking for an accountant with non-profit experience to prepare financial reports. We are also committed to increasing the participation of members in determining the priorities of the organisation, and we will be consulting with members about this early in the New Year.

Although Cort is moving to a new website, he remains welcome as a forum member and he is also still welcome to submit articles for publication on Phoenix Rising should he wish to do so. We would also like to take this opportunity to invite other community members, bloggers, physicians and researchers to submit articles for publication on Phoenix Rising. As a key part of our mission, we want to continue to enable, encourage and support ME/CFS patients in writing about their experience of ME/CFS and about ME/CFS issues. Some of these articles are donated, and others are commissioned and paid for by Phoenix Rising. Our standard rate for commissioned content is $50 per article, and higher rates can be negotiated for longer articles. Please email mark@phoenixrising.me if you are interested in writing for Phoenix Rising.

We sincerely hope that everyone will bear in mind that all of the volunteers at Phoenix Rising, including the board, work as unpaid volunteers and have ME/CFS, and our energy reserves are running low right now. We have faith in the Phoenix Rising community to pull together during this difficult time and help each other as we all come to grips with this change.

We also hope that we can all put aside our differences during the end of 2012 and the beginning of 2013 and as the saying goes “Say goodbye to the old and welcome in the new”. The board would like to wish all of our members and readers a Happy New Year and we sincerely hope that 2013 will be a positive and healthful year for all of us.

Sorry to be distracted by what was probably meant to be a trivial throwaway line but… $50 for writing stuff on the internet about CFS? Surely some mistake? Sounds difficult to work out which articles would be worth commissioning too.

If that stands I'm definitely going to try to turn some of my rambles into something more coherent!

Sorry to be distracted by what was probably meant to be a trivial throwaway line but… $50 for writing stuff on the internet about CFS? Surely some mistake? Sounds difficult to work out which articles would be worth commissioning too.

No mistake Esther. We think it's certainly a generous rate, but also a fair rate for high quality articles. We compared to blogging rates elsewhere and we did want to offer a good rate both to attract high quality and also because our bloggers are all people we want to be able to support financially – offering patients an opportunity to develop their writing skills, gain a platform, supplement their income, all of these things fit well within our charitable objectives as an organisation so it's a win-win-win model as I see it.

The rate does include payment for monitoring and responding to questions in the discussion, and of course some articles require a lot of research, watching video-conferences etc. So for articles like that in particular, it's a reasonable rate IMO.

In terms of working out which articles to commission, and from whom, those are relationships we develop and decisions we make on an ongoing basis. This is a fairly new model and it's still evolving, so details are likely to change. Maybe we'll pay less for some articles, maybe some of our bloggers will donate them, maybe we'll pay more for others. We'll see what works. As it stands, it's mostly me who'll be making those decisions for the time being. But I do hope that will change soon enough – I will need a team of editors, proof-readers, publishers etc and I hope somebody will emerge as editor. It would be nice if we could afford to pay that as a salaried position one day; we may be able to pay a little something in the short term. Not everyone can afford to do such work on a purely voluntary basis.

If that stands I'm definitely going to try to turn some of my rambles into something more coherent!

And I hope you and other forum members will take up the opportunity enthusiastically. Our budget won't stretch to paying for all content (I would like a target of at least one article each day, about 3 each week being paid), and I do envisage less experienced writers being paid less, initially, so this is all fairly fluid at this point but it's certainly an opportunity and we have many excellent writers here, so I hope this model proves a successful one for us all.

Sorry to be distracted by what was probably meant to be a trivial throwaway line but… $50 for writing stuff on the internet about CFS? Surely some mistake? Sounds difficult to work out which articles would be worth commissioning too.

If that stands I'm definitely going to try to turn some of my rambles into something more coherent!

PR gets several blogs that are donated as one would donate a dollar amount. That also helps to keep the website running and still give content to the community.

There are also many posts in threads that are considered to be of much value and those posts are unpaid. Look at all the posts from Richvank, and he never got paid for any one of his posts.

So, one has to decide if the article that is meant to be published is something to be possibly used as a donation or something that may have great value to the community as a journalist would do….

Thank you Mark for this statement.
I appreciate all the work that Cort, you, the board members and administrators have done to make PR the great place it is serving the ME/CFS community.
I am sorry about this separation and wish everyone good luck in the future.

Thank you Mark for this statement.
I appreciate all the work that Cort, you, the board members and administrators have done to make PR the great place it is serving the ME/CFS community.
I am sorry about this separation and wish everyone good luck in the future.

Thanks Nielk. We are all very sorry and upset that this has happened, but we have to make the best of it and move forward positively. I suppose we're all well accustomed to doing that anyway…

Our budget won't stretch to paying for all content (I would like a target of at least one article each day, about 3 each week being paid),

Mark.. may i make the suggestion that you start off with only paying for one article per week and choosing the best to be published and working up from there. I say this as the best thing about the articles which have been always posted on this site is the actual quality of them. We have always been able to trust that any article which is put out by PR is of extremely good quality and which wont be wasting our time and energy to be reading. To this point, there has never (oh except one) been a PR article I didnt enjoy reading.

I know it would put me off if the quality of the articles fell for more articles to be posted and I think great care has to be taken that the article quality is maintained.

I also know the sickest in our community may end up feeling overwhelmed by articles if suddenly there is an article daily…. maybe that is fine for a non ME/CFS community but it could be too much for many of a very sick community..

Please choose QUALITY over quanity when it comes to the articles (if we want to just read a lot of stuff..there is plenty of stuff to read on the forums).

Take care not to go making too much change here too fast and overwhelming yourselves.

So, essentially you are saying Cort didn't think he was going to get paid enough as the reason for his departure. This doesn't paint Cort in a very pretty picture.

Criticisms over the last eighteen months that he appeared to be more interested in making a dollar off the cfs community rather than helping find a cure appear to have been on the mark. Is this a case of one more person looking to make a living off us?

I still don't understand where the money was going to come from. By the sound of it, Cort was asking for a lot. Where was this money going to come from?

Until Cort notified us on December 24th of his plans to launch a new website, we were under the impression that Cort would be continuing to post articles for Phoenix Rising according to the arrangements we had agreed with him in recent months.

Had Cort removed himself from the board some months prior? This statement would appear to hint at that. Why were we not informed then?

The arrangements with Cort to post articles, were they paid for by PR? How far back does this go? Is the board aware of any additional payments for those articles from outside agencies. Was Cort paid to write those articles? By whom?

Many members, not all, I note, read Cort's articles because they think they are unbiased. If they were being paid for, they were not unbiased.

Further more, from the statement, it appears that the board is unable to detail payments to the non-profit entity, which also needs explaining. If this is indeed the case then the books will have to be audited, not just looked at.

I am not sure that Cort was ever on the Board, Rusty. One aspect of transparency would of course be the publication of financial accounts – something that Mark has talked about above.

I have never really got a handle on the 'blog' aspect of this forum. And this notion of payment for what I would consider to have been a voluntary effort – doesn't immediately sit well with me either I have to say.

But if it's the 'norm' and if in future these things are made plain to us all – I'll go along with it. I also have some concerns with the process by which members (and 'outsiders') come to be appointed to the Board and what that Board is responsible for.

Until such time I suppose as this charity is more formally dedicated, and some form of voting occurs, I really can't consider PR to be such a body.

To me it has always been and will remain a free and public forum.

I hope we will hear more from the Board about all of this in the near future. I am well aware of how much it can 'cost' for people who themselves are sick to 'step up to the plate'. More than aware.

However, if things are set-down properly at the start then these procedures will serve to protect the Board as well as enable members (whose status also needs to be laid down) and those donors to feel more secure.

Documentation is a pain in the arse but necessary and indeed essential. Thanks for the statement, Mark and co. I wish you all the very best and will lend a hand if you need one and I am able.

It's a wow wow situation – this site (unmatched) is the greatest source for all – science, aids, companionship, humour – let us keep it this way. And recognise our best in ME – eg Cort's foundation and continuing commitment.

Yep not too keen on science findings now – hovering to accept views of what one can only describe as mumbo jumbo ( in case it might upset) – too full of reported "science" findings in GET/CBT – I could well be struck off PR tomorrrow – not apparently following the thread – what a wish the current ambience in PR are very anxious to – what can one say – nothing more than just do not upset (blow science) and ignore.

$50 an article doesn't sound very well thought out. You should post guidelines, length of articles, and submission guidelines. It seems a little odd that this site is now paying for blog postings and articles. I'm not sure it's a direction that makes sense for a nonprofit site whose main areas of activity are the forums, and formerly Cort's blog postings. It's going to take more work than you realize to commission high profile postings, and it's going to hurt feelings of community members when they want to be paid their $50 for postings that really don't deserve it.

The whole thing still seems completely bizarre, and much will probably never be explained. I hope you weren't planning on paying Cort only $50/posting. He probably deserves $1000/posting. Professionals science writers get $1-4/word, depending on what venue writing for ($1 on web) and how high profile (very high profile, $4/word). In addition, professional bloggers at most paid sites get bonuses for eyeballs–sometimes very lucrative.

It doesn't sound well thought out, and it sounds like you shot yourself in the foot, by not paying Cort enough.

In addition, I think your stated goal should be to be transparent enough to make it onto Charity Navigator's approved list. And if any of the board members or other volunteers are paid in dollars, for anything, those amounts should be made public in January 2013. Not just the $50 for blog postings. "Administrative fees" must be public now. And not late in 2013, but in January. If anybody is being paid, they already know what they're getting.

In addition, I think your stated goal should be to be transparent enough to make it onto Charity Navigator's approved list. And if any of the board members or other volunteers are paid in dollars, for anything, those amounts should be made public in January 2013. Not just the $50 for blog postings. "Administrative fees" must be public now. And not late in 2013, but in January. If anybody is being paid, they already know what they're getting.

In addition, I think your stated goal should be to be transparent enough to make it onto Charity Navigator's approved list. And if any of the board members or other volunteers are paid in dollars, for anything, those amounts should be made public in January 2013. Not just the $50 for blog postings. "Administrative fees" must be public now. And not late in 2013, but in January. If anybody is being paid, they already know what they're getting.

As we mentioned in the statement, our goal is full transparency and you are right that we want to make it onto Charity Navigator's approved list. As we've also mentioned in the statement, we will need some accountancy support in order to achieve that, but your question about pay for board members or other volunteers, administrative fees etc, is easily answered now: none of the current board members or volunteers have received any such payments to date, we have all worked in a purely voluntary capacity. I am not sure what exactly you mean by "administrative fees" but if you are referring to the board members, none of us have ever taken any such payments and we don't expect to do so: we are all volunteers. We will post more information about these matters when we have accurate information we can disclose.

Regarding the idea of paying Cort $1000/post, of course we could not and cannot pay Cort money that we do not have. We did investigate standard rates and formulas for blog posting, and calculated based on our site viewing statistics, before setting the rate. Guidelines on the submission process and article length are in development. Those who have already contacted me about writing articles have said they will be happy to donate their articles, and I expect high quality content from those people. I don't think it's unreasonable, though, to make some payments to contributors and volunteers in recognition of the time they put in. Personally, I am and always have been here on a purely voluntary basis, and I have never taken and never will take any payment in relation to my work for Phoenix Rising, but if we are able to support patients who volunteer their services by paying them something for the valuable work they do, I think that's a good thing.

Mark.. may i make the suggestion that you start off with only paying for one article per week and choosing the best to be published and working up from there. I say this as the best thing about the articles which have been always posted on this site is the actual quality of them. We have always been able to trust that any article which is put out by PR is of extremely good quality and which wont be wasting our time and energy to be reading. To this point, there has never (oh except one) been a PR article I didnt enjoy reading.

I know it would put me off if the quality of the articles fell for more articles to be posted and I think great care has to be taken that the article quality is maintained.

I also know the sickest in our community may end up feeling overwhelmed by articles if suddenly there is an article daily…. maybe that is fine for a non ME/CFS community but it could be too much for many of a very sick community..

Please choose QUALITY over quanity when it comes to the articles (if we want to just read a lot of stuff..there is plenty of stuff to read on the forums).

Take care not to go making too much change here too fast and overwhelming yourselves.

Thanks for those thoughts Tania, it's very helpful to get members' views on these questions.

I can assure that we're determined to maintain the quality of the articles, and we certainly won't be posting articles just for the sake of it. And the goal of one post each day is a medium-term goal at best; until we have a bigger Content Team that won't be possible anyway. Volunteers for various roles within the content team will be most welcome, by the way – anybody interested in that please do contact me.

There are actually quite a range of subjects for articles which we would wish to post, and which we receive inquiries about, so to expand a little on that: I expect you will recall the recent articles on the Simarron fundraising, the Aviva contest, and the FDA hearings. There are always community fundraising and advocacy issues like that going on, in addition to the science articles, and articles about the experience of living with ME/CFS – and we will want to have regular articles about Phoenix Rising itself too, communicating about our volunteer staff, the organisation, and our projects – so I think there's more than enough important material to need a post each day to cover everything.

My rough thoughts at this point are to have regular slots, such as (for example) a fundraising article every Tuesday, a review of the week's ME/CFS news on Saturday, a round-up of the best forum threads on Sunday, and other regular days for science articles and lifestyle articles. In that way, readers can stick to the type of articles that are of most interest to them, and hopefully having a lot more content shouldn't need to be overwhelming, nor should it mean a lower quality of writing. But these are just my own ideas: how this evolves will be a team effort, and it will depend to a great extent on the thoughts of members, volunteers and contributors. I look forward to hearing more views on this – and I especially look forward to hearing from people interested in contributing content or helping with proof-reading, editing, etc.:)

Go for it Esther :). Change causes us to adapt and one positive outcome of all of this is bringing out more voices from the community; ultimately making it more effective. Bringing in more bloggers, is something, in retrospect PR should have been done long ago. Jody, for instance, has a touch and a focus that I just don't have. I hope to blog from time to time as well.

Mark, I suggest you establish some kind of independent volunteer editorial board and not all from Phoenix Rising. If patients start submitting lots of articles–for a bedridden patient on SSDI $50 is enticing–and then are accepted or rejected in what they perceive as a willy nilly way, there could be problems. There has to be a way to avoid favoritism and only post newsworth $50 blogs.

Thanks for your other post, it's helpful. I'm sure the community would still like total openness re: why in the world the founder would leave.

And do not let us forget (sans proof reading, plod science as it goes – you may be) – the thinkers who have the ability to rise above and put two and two together to resolve. Sorry Mark we part company here – it's sheer brilliance now.

So, essentially you are saying Cort didn't think he was going to get paid enough as the reason for his departure. This doesn't paint Cort in a very pretty picture.

I don't know how you have interpreted that from the board statement, or from anything I have said. Rusty, but this is not what I/we have said. The board have not commented on the issues behind Cort's departure from PR. As mentioned in the statement, the board will meet in January to prepare a statement, and we will be focusing on how we can all move forward together positively. You've asked a number of valid questions, and I hope we will be able to answer them in due course, but in the meantime I'll ask everyone to bear with us and try to avoid speculating or jumping to conclusions.

I am not sure that Cort was ever on the Board, Rusty. One aspect of transparency would of course be the publication of financial accounts – something that Mark has talked about above.

I have never really got a handle on the 'blog' aspect of this forum. And this notion of payment for what I would consider to have been a voluntary effort – doesn't immediately sit well with me either I have to say.

But if it's the 'norm' and if in future these things are made plain to us all – I'll go along with it. I also have some concerns with the process by which members (and 'outsiders') come to be appointed to the Board and what that Board is responsible for.

Until such time I suppose as this charity is more formally dedicated, and some form of voting occurs, I really can't consider PR to be such a body.

To me it has always been and will remain a free and public forum.

I hope we will hear more from the Board about all of this in the near future. I am well aware of how much it can 'cost' for people who themselves are sick to 'step up to the plate'. More than aware.

However, if things are set-down properly at the start then these procedures will serve to protect the Board as well as enable members (whose status also needs to be laid down) and those donors to feel more secure.

Documentation is a pain in the arse but necessary and indeed essential. Thanks for the statement, Mark and co. I wish you all the very best and will lend a hand if you need one and I am able.

Fire 😎

I expect we will be able to answer these questions to your satisfaction in due course, Firestormm. Perceptive remarks, and I'll reiterate that the board members are all firmly committed to financial and organisational transparency. Personally, I'm here purely as a volunteer, but I don't have any qualms about a non-profit organisation making payments to patients for valuable work that they do – some of us can afford to give our time for free, but it's more difficult for others. I think that you – and others – are right in highlighting that the important principle here is transparency. Incidentally, Phoenix Rising's low turnover means that there has been no legal requirement to date for us to publish accounts, but the board are of the opinion that we should do so nevertheless and we aim to do so as soon as we can.

We bear all, we welcome all, and very much all the scientists/medics battling to understand ME. Theory like Cort trying to understand & bring together brain/cognitive damage our way forward. (Though I must say my own brain has improved much recently).

I do get very worried for those sucked into the psychos – it doesn't belong.So I'll ignore your what shall I say somewhat patronising comments if you will ignore mine.

Mark, I suggest you establish some kind of independent volunteer editorial board and not all from Phoenix Rising. If patients start submitting lots of articles–for a bedridden patient on SSDI $50 is enticing–and then are accepted or rejected in what they perceive as a willy nilly way, there could be problems. There has to be a way to avoid favoritism and only post newsworth $50 blogs.

The 'volunteer editorial board' sounds rather like the Content Team we are setting up. Editorial decisions regarding Phoenix Rising content are a Phoenix Rising matter, so I don't see the rationale for an independent board with members from outside Phoenix Rising, but the issues around 'commissioning' that you highlight will indeed need to be managed and I'm aware of that. We have been working this way for the last few months, actually, and I'm not aware of any such problems so far. I've been discussing with contributors what content we want, what changes or edits are needed, etc, and several good writers seem to be happy to donate their content, so I expect this to work well.

Thanks for your other post, it's helpful. I'm sure the community would still like total openness re: why in the world the founder would leave.

I'm not sure that's true actually: some people want an explanation, but other people have posted saying that they do not want us to go into those issues, and a public dispute about these issues may not be in the community's best interest. As we've said, the board will be posting a further statement in January, and until then I can't comment on this.

Extending the source of contributions to beyond patients and carers is an extremely worthwhile ambition. However if PR is serious about this, there will need to be a significant change in posting policy if there is to be a genuinely open invitation to researchers. It is entirely a matter for the PR trustees, but unless there is a very clear policy of ‘no personal attacks’ on anybody (as distinct from criticism of work) on academics no matter what their perspective, then any stated wish for researcher contribution will be hollow, and partialist at best.

IVI

If there are specific examples of the personal attacks you refer to in forum posts, you should report them, of course. The board and volunteers at Phoenix Rising do very much dislike personal attacks of all kinds, and I think that this forum deservedly has a good reputation for taking a firm line on this question and for enabling intelligent debate free from abuse and personal attacks. We do have to also give room for members to express their views, of course, so it is sometimes a difficult job to balance these issues, but we do our best. It is quite possible that the moderation policy may in future evolve in the direction you suggest, and if we speak with researchers or physicians and find that they don't want to post here because they are uncomfortable with our moderation policy, then clearly that would be something we'd have to think about. I think we will always be 'partialist' in one sense though: we are not a 'neutral' organisation in the sense that we are patient-led and patient run and I think we will continue to come from a perspective that supports and gives voice to the concerns of ME/CFS patients.

My first thought is that you might want to think over paying a small fee for articles. My reasoning is that
— the site can't afford to pay enough for professional content, written by someone who is using their work time and needs to make a living from writing
— paying for some articles, even a token amount, is going to make people wonder if they're on the short end if they submit an article as a volunteer. It's not unreasonable, as the site needs some articles which have been proofread, revised and polished enough to put on the front page and it needs them on a regular schedule. But something being reasonable doesn't always make it a good business decision. One could try to work this one out, such as making the paid article a weekly thing with the understanding that PR is paying for keeping the front page active, even if unpaid articles may have greater depth or quality of content.
— there is an odd effect that people will put greater effort into a volunteer project where there's a need at hand than they would if being paid a modest amount. Volunteer firefighers are an example. By paying just a little for an article, it confuses the issue of whether its a volunteer effort for the benefit of people in need plus a benefit to one's name or just a job.

You have a tough job to do; dealing with a disease which seems to target the CNS and managing a website is a wall to climb.

Perhaps you could issue an appeal for articles and $2 contributions from readers? That would go a ways to keeping the site running while the board sorts out how to get a more permanent arrangement.

Mark you give your time with restricted energies in this very important site – is it possible we can bring Cort somehow back into OUR fold. He has so much to bring (and has to live).

As mentioned in the statement, the board continue to welcome article contributions from Cort, and as he's mentioned above, he hopes to blog here from time to time. He's still a forum member of course. So hopefully he will still be around on PR.

My first thought is that you might want to think over paying a small fee for articles. My reasoning is that
— the site can't afford to pay enough for professional content, written by someone who is using their work time and needs to make a living from writing
— paying for some articles, even a token amount, is going to make people wonder if they're on the short end if they submit an article as a volunteer. It's not unreasonable, as the site needs some articles which have been proofread, revised and polished enough to put on the front page and it needs them on a regular schedule. But something being reasonable doesn't always make it a good business decision. One could try to work this one out, such as making the paid article a weekly thing with the understanding that PR is paying for keeping the front page active, even if unpaid articles may have greater depth or quality of content.
— there is an odd effect that people will put greater effort into a volunteer project where there's a need at hand than they would if being paid a modest amount. Volunteer firefighers are an example. By paying just a little for an article, it confuses the issue of whether its a volunteer effort for the benefit of people in need plus a benefit to one's name or just a job.

You have a tough job to do; dealing with a disease which seems to target the CNS and managing a website is a wall to climb.

Perhaps you could issue an appeal for articles and $2 contributions from readers? That would go a ways to keeping the site running while the board sorts out how to get a more permanent arrangement.

Thanks for those thoughts. These concerns are understandable, and of course I've thought about these things, but as I've mentioned above, these issues haven't turned out to be a problem so far. Some people make part or all of their living from blogging, others are just getting started and are happy to have the opportunity to develop their skills. Some are already professional writers, others need more support, editing and proof-reading. Some people just don't have the time to contribute unless they are paid, while others are more than happy to contribute articles for nothing. You're right that contributors need to be sensitively managed to avoid the potential for resentment or misunderstandings, but I think that can be done. And high quality content does drive page-views, which drives donations…so paid content can also be a good investment.

The board have looked at all these issues, and at our finances, and the formula I've described above is one that I believe to be sustainable: we should be able to pay for 2-3 articles each week and continue to support the rest of our projects and infrastructure, but we will of course review all this regularly and there will be more transparency on these issues in future so that members who are interested can have a better understanding of why we take the decisions we do.

– some of us can afford to give our time for free, but it's more difficult for others..

Many with ME/CFS arent working at all so working slowly on an article is actually a way to be usefully killing time… so many can afford to give this time for free.

Im not comfortable with the site paying out for articles (unless its done by one who has a big following who will attract people to the site or by someone who is well known in the field.. eg one of our specialists)… or say a post on a study which hasnt been published eg like the Klonopin study in us that Cort put together.. that was well worth paying to put together a study and publish the results. I'd love to see no biased people transparently put together more studies on how various supplements or meds work in us and publish that at the site.

My rough thoughts at this point are to have regular slots, such as (for example) a fundraising article every Tuesday,

we receive inquiries about, so to expand a little on that: I expect you will recall the recent articles on the Simarron fundraising, the Aviva contest, and the FDA hearings. There are always community fundraising and advocacy issues like that going on,

I do view the importance of fund raising for ME/CFS EXTREMELY HIGH.. but once again I want to say I think only the most important things should be focused on and a think a weekly posting on this could make people miss the most important things whether its something which needs urgent fundraising like Simarron fundraising or votes urgently needed to help an org in a competition (I think standing as one and helping our orgs in these competitions is important). I'd hate to see the most important things being overshadowed by the less important ones which from what you said I think is going to happen.

Note too that this site doesnt end up doing much of same old of what the ME/CFS (SA) branch site does (does the one who pulls the news together from around the world do it for free there? As far as Im aware he's a volunteer).. note I arent attracted to go there and read its blogs daily, (I wonder how many here are?) thou its certainly a good blog it doesnt hold any special appeal to me to draw me there.

If someone is just seeking a daily good news blog.. the ME/CFS Sth Australia site would be an excellent place to go http://sacfs.asn.au/. (I want to see more then just a good blog thou) . It would be a piity to be publishing blogs which generally arent really singing to people here.. just the normal kind of stuff found online.. while paying people to do them.. it kind of is grating that the site is planning to waste the money willings like that. (The SA ME/CFS site is very good on its blog for news but doesnt advovate for things such as Aviva etc so this site could fill in gaps like that). Im not into lifestyle blogs.. I can just get any lifestyle advice directly throu the forum as all of us can.

We also go to the PR forums for the latest news (or the ME/CFS SA site).. so I dont feel like we need to have the same things repeated in a blog.. unless its very important. As to highlighted the best forum post of the week… some may actually feel uncomfortable about that if its their post… not all are comfortable in the highlight. I think you need to clarifiy if you plan to do that that you will seek permission of the person to make sure they are comfortable in their original post being highlighted in that way (thou I do understand this is a public site..but I still think it would be highly rude to take someones post from a forum and make it be highlighted for the sites blog without making sure they are fine about it).

Sorry Im disappointed.. I cant remember paying people to do blogs specifically being mentioned as being one of the things the competition money would be spent on when people were being encouraged to be voting. There where other things which sounded good to be spending the money on.. which were mentioned. There I said it now.. I was containing my feelings some about how I feel about that paying to any tom dick or harry for an article.
…..

How about also thinking about this site finanically.. that comp money isnt only going to last long to help support this site and its costs. Maybe a wee bit of the money could be put into some idea to help bring some money back to reput back into the site. I personally think it would be wise to do that and be doing some future planning too to make sure this site stays alive (what if the sites tech gets too sick for weeks and u need to actually pay for someone to temporary hold this site together or whatever. I know this is a non profit site but please think ahead and have some plan in place for crisises which could use more PR money then normal). So anyway a big question I have which I'd like answered at some point by the board.. is any of the winnings going to go towards making this site into an even more financially substainable site? which is then also capable of more growth..hence more power for advocacy or whatever .

There are many great brains on this site still (even if they are full of holes!!). Im sure people could come up with some ideas for this non profit group to be also having a bit more money come back in. If this isnt considered too.. what will happen when u guys get used to running this site on this extra money from the comp and then this money runs out? Will we then loose these new things being planned right now? Ask yourselves if any changes u make which will consistantly use money into the future.. if they will be sustainable if u didnt have the extra money to play around with.

Someone asked the other day what will be done with the extra money and was answered by a post on the general goals/aims of PR. That to me didnt answer the question at all on HOW exactly the money would be spent. Im really looking forward to hearing more about things and looking forward to this site becoming more transparent. I was looking not long ago at some of the financial statements of well known charities (not ME/CFS ones) and some of them are so so transparent cause they really break down the costs and expendures.. so people can really see where their finances and donations go to. (I was actually surprised to see just how transparent some huge orgs can be)

Sorry if my post sounds harsh.. you guys I know are putting a lot of work in and I thank you for that. But can a vote be set up so you can more better guage if your ideas for this site are good ones or not. I think its highly important that any thing done, that the "majority" of this community thinks its a good idea too.

Yeah, I think this could be a problem. I know this is all just developing at the moment, and we don't know the specifics, but $50 seems too high for an initial figure.

A lot of people are pretty hard pressed for money, and unable to earn it in normal ways. If the pay is too generous, it could end up being a dangerous situation where people feel quite desperate to get a blog article commissioned just so that they can pay for food and shelter.

Personally, I think it would be best if any pay was low enough to be more of a little bonus for doing something one would do anyway, and maybe an incentive to try to produce something of slightly higher quality, or more carefully written, than one would otherwise. I understand PR wanting to help support those who contribute to it, but I think it's probably best to be cautious about introducing payments.

Having said all that, some people have done some really amazing pieces of work on here, and for them $50 seems cheap! (But those suckers are already doing it for free already!)

Cort

Go for it Esther :). Change causes us to adapt and one positive outcome of all of this is bringing out more voices from the community; ultimately making it more effective.

I've talked myself out of it now. Maybe I will try to turn some posts in to articles… I am quite used to writing as part of a discussion though.

Sorry for having all my attention drawn to the prospect of getting $50! See what could happen here Mark… I've got dollar signs in my eyes.

Many with ME/CFS arent working at all so working slowly on an article is actually a way to be usefully killing time… so many can afford to give this time for free.

Indeed.

Im not comfortable with the site paying out for articles (unless its done by one who has a big following who will attract people to the site or by someone who is well known in the field.. eg one of our specialists)… or say a post on a study which hasnt been published eg like the Klonopin study in us that Cort put together.. that was well worth paying to put together a study and publish the results. I'd love to see no biased people transparently put together more studies on how various supplements or meds work in us and publish that at the site.

I think the articles we have paid for and will pay for in the future are articles such as you describe. Just being paid for your work writing an article doesn't entail a conflict of interest: that would only apply where payments related to the subject being written about and were undisclosed.

I do view the importance of fund raising for ME/CFS EXTREMELY HIGH.. but once again I want to say I think only the most important things should be focused on and a think a weekly posting on this could make people miss the most important things whether its something which needs urgent fundraising like Simarron fundraising or votes urgently needed to help an org in a competition (I think standing as one and helping our orgs in these competitions is important). I'd hate to see the most important things being overshadowed by the less important ones which from what you said I think is going to happen for me (hence then bringing down the importance of the whole thing for me when one has to waft throu lesser things).

You're quite right that there's a balance to be struck to make sure we focus on the most important issues and don't bombard people in a way that detracts from that focus. I'm sensitive to that and I'm sure our editorial policy will continue to aim to take that into account.

We also go to the forums for the latest news.. so I dont feel like we need to have the same things repeated in a blog.. unless its very important.

The readers of the blog posts are a quite different group to the forum members at present; there is an overlap of course but a lot of people read the blog that don't visit the forum. We do know quite a lot about this from server stats and all of that is quite a big factor in how we manage things. There are lots of evolutions and improvements we want to make in these areas and the board have to look at the big picture. I would like to make stronger links between the forums and the blog posts because they could promote each other better. Actually, forum members have appealed in the past for summaries of news and summaries of best forum threads, but how we might do that remains an open question and we'll discuss it all openly with forum members.

As to highlighted the best forum post of the week… some may actually feel uncomfortable about that if its their post… not all are comfortable in the highlight. I think you need to clarifiy if you plan to do that that you will seek permission of the person to make sure they are comfortable in their original post being highlighted in that way (thou I do understand this is a public site..but I still think it would be highly rude to take someones post from a forum and make it be highlighted for the sites blog without making sure they are fine about it).

Quite right, we'll have to consult about these issues.

Sorry Im disappointed.. I cant remember paying people to do blogs specifically being mentioned as being one of the things the competition money would be spent on when people were being encouraged to be voting. There where other things which sounded good to be spending the money on.. which were mentioned. There I said it now.. I was containing my feelings some about how I feel about that paying to any tom dick or harry for an article.

I sense your fears about this but I don't think you need to worry. If you were happy with the articles in the last few months then I don't think there will be a huge change from that. I don't think the money for this will be coming from the Chase competition money. Articles actually drive donations in a significant way, so when we pay $50 for an article we will often get more income than $50 as a result: this is more like an investment than simply a cost. And we won't be paying any tom dick or harry: we will be paying for high quality content from writers that we know and trust.

How about also thinking about this site finanically.. that comp money isnt only going to last long to help support this site and its costs. Maybe a wee bit of the money could be put into some idea to help bring some money back to reput back into the site. I personally think it would be wise to do that and be doing some future planning too to make sure this site stays alive.

The board are doing all of that, of course: that's at the core of our responsibilities. We do have access to a lot more information than members do about these issues, and that informs our strategy and decisions. We would very much like to open up that information and be as transparent as we can be, but taking informal data that's constantly changing and turning that into information that can be published is a significant task: it will take time and effort.

I do hear your concerns, and you've raised some very valid points which we're aware of and will be monitoring and managing as we go along. I don't think you should fear this though: this is not a big or sudden change (part of your concerns are because you don't know all the details about how things have been structured in the past), and we'll be open to feedback from you and other members on what we do and whether it's working or not.

It's very sad for everyone Enid. It's especially sad for those of us who have worked closely with Cort for years because we share his commitment to progressing the understanding of ME.

As we've said in our statement, we do very much regret that this announcement has happened in a way that has caused some confusion and distress. It's difficult for everyone, and we know that some people are upset. Even moderators and board members have feelings. Please try to understand that this is difficult for everyone, there is no malice involved, and we are all just trying to move forward positively.

The readers of the blog posts are a quite different group to the forum members at present; there is an overlap of course but a lot of people read the blog that don't visit the forum

Thanks for pointing that out… that's true. I myself used to just read Corts blogs and wasnt involved in the forum at all.

. I don't think the money for this will be coming from the Chase competition money. Articles actually drive donations in a significant way, so when we pay $50 for an article we will often get more income than $50 as a result: this is more like an investment than simply a cost. And we won't be paying any tom dick or harry: we will be paying for high quality content from writers that we know and trust.

Thanks for explaining that. That's reassuring to all know.

. If you were happy with the articles in the last few months then I don't think there will be a huge change from that.

I dont think Ive read many of the articles in the last few months at all (unless there was far less) due to not many drawing my attention and just being things I could expect to read on forums. I think Ive ignored most of them (I thou cant even remember how many there's been). Ive always been one who's just mostly looked out for Corts post.). That area has fallen short for me the past few months (whether it was from lack of good blog posts or what.. I dont know). The only blog right now I can remember I got real excited about the past few months was the benzo one.

I actually almost asked what on earth was going on with the blogs due to the change in things which I'd noticed for quite a while now.. was missing Corts posts and there was like a hole in this area.

Actually, forum members have appealed in the past for summaries of news and summaries of best forum threads, but how we might do that remains an open question and we'll discuss it all openly with forum members.

Nods.. I do agree that would be good. but in the forums. My suggestion would be to list the best forum threads in the forum area (unless the non forum people generally have an interest on what is happening in the forum?)

Summary of news sounds good to me too.. but news of the "major nature" doesnt come out weekly and if you are weekly trying to find enough news to do a PR news blog summary of the news of the week.. i think you wil be really scrapping at the bottom of the barrel unless you are including some very minor news things to take up the space which then would only affect the quality of the article.

I suggest rather then weekly summary, a monthly PR blog post of a quick run down of the highlights of what was major ME/CFS news which includes links for more info on each thing eg new ME/CFS study which just was published or a link to a ME/CFS winning a comp news article or whatever. I suggest to keep things simple and stick to the major things for the quite sick patient group. Of cause a summary of the news wouldnt stop a very major event article being posted during the month on PR eg run down on an important ME/CFS conference which happened (this is the kind of area which the SA ME/CFS site news often miss) or whatever the big news was..

We all want to contibute our opinions, but don't want to contribute to the work. I know, most of us simply cannot.

In the meantime, PR doesn't appear to have the people they need to get the most important projects finished within a reasonable timeframe, let alone consider implementing new ideas. I draw this conclusion from the fact that they're requesting volunteer assistance with accounting in order to provide transparency, and also that a Board member rather than a designated PR spokesperson is spending all day replying to these comments instead of directing that massive amount of time and energy towards attending to the actual organizational issues in question.

I suggest PR consider hiring out the tasks they are unable to do rather than stretching themselves too thin or expecting new volunteers to appear and take up the slack. Regardless of feelings on the current issues, I think we can all agree that everyone wants everyone else to be as healthy as is possible.

Mark – there must be some way through this – Cort is PR – he has to eat – his comittment self evident – his capacity for analysing dare I say despite plodding science with inspirational thinking unique – there is no one else here on PR who dares to try. You have a rare bod with a special place and should treat accordingly.

Mark – there must be some way through this – Cort is PR – he has to eat – his comittment self evident – his capacity for analysing dare I say despite plodding science with inspirational thinking unique – there is no one else here on PR who dares to try. You have a rare bod with a special place and should treat accordingly.

If Cort is PR then I don't know what the rest of us are doing here! o_O (No offense, Cort! 😉 )

I'm a little confused…you're saying $50 an article is not enough to obtain sufficient food?

Well he started Dainty – don't know the finances except all pushed – over to the Board. What does it take for you to eat and run heating, living, lighting, food, internet connection, rates, rent etc. ?

I imagine there are many patients in the same position of having to scrape by. I certainly am one of them. I am very skeptical of anyone trying to make a living of patients. I don't think it is right that someone, regardless of their contribution, should demand that patients reimburse them for their efforts. There are too many people in the industry who have set aside what is right to earn a living off patients. The business of earning off patients is not about doing what is best for patients. It introduces conflicts.

Furthermore, it has always been accepted that articles contributed by commercial interests be headed up as "Advertorial". Cort's current arrangement means that his current and future blogs should labelled as such. The reasons for this should be obvious.

The big question is how many of his blogs on this site should also be labelled "Advertorial".

Summary of news sounds good to me too.. but news of the "major nature" doesnt come out weekly and if you are weekly trying to find enough news to do a PR news blog summary of the news of the week.. i think you wil be really scrapping at the bottom of the barrel unless you are including some very minor news things to take up the space which then would only affect the quality of the article.

I suggest rather then weekly summary, a monthly PR blog post of a quick run down of the highlights of what was major ME/CFS news which includes links for more info on each thing eg new ME/CFS study which just was published or a link to a ME/CFS winning a comp news article or whatever. I suggest to keep things simple and stick to the major things for the quite sick patient group. Of cause a summary of the news wouldnt stop a very major event article being posted during the month on PR eg run down on an important ME/CFS conference which happened (this is the kind of area which the SA ME/CFS site news often miss) or whatever the big news was..

Heaps started a thread HERE about other organizations and the issue of me/cfs news summary came up.
Reading this I was like … hmmm I thought I posted here on this…. lol but it was elsewhere.

Charities/not-for-profits, paying for content is normal people…has been for a long time. Of course such organisations also benefit from donated content, discounts and other good will from contributors and that is a good thing, but such organisations correctly act business like and make business decisions like Mark is describing. An online organization like PR thrives on content for the site. without it it doesnt grow and could even die. Paying for content that brings in a net profit is good. It's prudent because an Organization like this can grow and affect more change if they are more profitable. Failure to do stuff like this would be mismanagement.

Regarding quality of content, not everyone can write well and a stand alone article and a forum post (even good ones) are different beasts and it takes skill, time, effort and a great deal more accuracy and experience to research and write good quality articles.

I would challenge anyone who has reservations to try writing such a quality article that a group of peers would agree was worthy of the mentioned $50 fee. Chances are you'll feel like you earnt it by the end! And what it boils down to is such quality articles translate to profit for the Organization paying for them.

Personally, I'm pleased if a charity I donate $50 to then invests that sensibly and quickly turns that into $70 with which they can achieve a greater end result.

I imagine there are many patients in the same position of having to scrape by. I certainly am one of them. I am very skeptical of anyone trying to make a living of patients. I don't think it is right that someone, regardless of their contribution, should demand that patients reimburse them for their efforts. There are too many people in the industry who have set aside what is right to earn a living off patients. The business of earning off patients is not about doing what is best for patients. It introduces conflicts.

Furthermore, it has always been accepted that articles contributed by commercial interests be headed up as "Advertorial". Cort's current arrangement means that his current and future blogs should labelled as such. The reasons for this should be obvious.

The big question is how many of his blogs on this site should also be labelled "Advertorial".

I see your point. I am thinking that maybe a way to dispel some of the concern would simply be to have the blogs/articles well cited. Most people exhibit a bias, even though they may not intend to. When we write about topics we tend to highlight some things and downplay others. It is quite impossible to include everything and sometimes even including representative contesting views is difficult. With works well cited (and with hyperlinks to sources), people could read what they want, take from it what they want, or research the subject as much as they want and then post replies. Overall, it would provide for a better informed writer and audience.

Cort has been very forthcoming about his new endeavor:

Cort

Health Rising is not a non-profit. Doing another non-profit is not high on my list right now :).but maybe in the future…

Simmaron is helping to sponsor the new site. Hopefully the site will get more sponsors which will enable me to do more things…..I have a long list.

I'm very proud to have Simmaron as a sponsor. .

And that is fine. A commercial view is not always bad, especially if it is well cited; then it just lends a different perspective. And In general, I think all works should be read with a critical eye.

I look at this in example: If I am searching for information on vitamins/supplements then I would like to find some factual/unbiased reviews. Many can be found on pubmed, but it can take a lot of reading. Many vitamin/supplement sellers will post favorable research reviews on their website to help sell the product. This can help me, as they have already done some of the legwork for me. That, I feel, is a good place to start. Then I also look for more detail, anything negative, or contraindicated, and it is nice to have some anecdotal response.

One more example that can show how this works, is the recent Ampligen hearings. There was plenty of hoopla invested in the drug, but there was also many people pointing out Hemispherx’s bad science, and likely unethical practices. So, in that case, no amount of commercial endeavor could push through some glaring concerns. On the other hand, some may blame the bumbling bureaucracy of the FDA. There are many sides to the argument.

I see the same type of citation/argument as a good platform for PR contributions. There is also a strong incentive behind that way of doing things. If part of the contributor requirement is to "defend" the contribution, then most people are going to make sure to cover their bases, by doing their research and being fair to many sides of contention. If not, they may find their ideas coming under fire and consuming more of their time than would have been spent by presenting a fair view in the first place.

Well he started Dainty – don't know the finances except all pushed – over to the Board. What does it take for you to eat and run heating, living, lighting, food, internet connection, rates, rent etc. ?

Right, he started it – and then he gifted it to the common good. Turning an organization into a charity involves giving up your rights of ownership, which is a very generous act and I'm thankful Cort had the heart to go that route. Being the founder of a dynamic, effective nonprofit entitles a person to a great deal of respect, but it does not entitle them to a job. That right is laid aside during the incorporation process into a nonprofit. Cort didn't have to do this, indeed, if making a living off of PR was important to him it would have made more sense to keep it for profit. These were his decisions.

What about the other volunteers working full time to keep PR up and not receiving a dime for it? Don't they have to eat, too? Why do you feel strongly about Cort getting paid more than $50 an article when others who sacrifice their daily lives for PR aren't receiving anything at all?

I see the same type of citation/argument as a good platform for PR contributions. There is also a strong incentive behind that way of doing things. If part of the contributor requirement is to "defend" the contribution, then most people are going to make sure to cover their bases, by doing their research and being fair to many sides of contention. If not, they may find their ideas coming under fire and consuming more of their time than would have been spent by presenting a fair view in the first place.

– just some thoughts

I tend to agree with you, AFCFS. Mainly because I use the internet nearly every day, and I know that all these "free tools" (gmail, yahoo, etc) are not really free at all. These companies are giving you free email, news, content, because they want to sell you stuff. They all have a profit motive. Yet in many cases, the news and analysis they provide is extremely intelligent and salient.

When we see ads or content making unscientific or obviously unsupported claims, we just skip over the content. The market place weeds out weak or unsupported ideas. Or sites that overly crowd the reading field with junk ads tend to lose readers relatively quickly. ME/CFS readers tend to be quite well-informed and motivated. Web sites that insult the intelligence of these readers will quickly find themselves extinct. Credibility is slowly earned, but quickly lost.

I tend to agree with you, AFCFS. Mainly because I use the internet nearly every day, and I know that all these "free tools" (gmail, yahoo, etc) are not really free at all. These companies are giving you free email, news, content, because they want to sell you stuff. They all have a profit motive. Yet in many cases, the news and analysis they provide is extremely intelligent and salient.

When we see ads or content making unscientific or obviously unsupported claims, we just skip over the content. The market place weeds out weak or unsupported ideas. Or sites that overly crowd the reading field with junk ads tend to lose readers relatively quickly. ME/CFS readers tend to be quite well-informed and motivated. Web sites that insult the intelligence of these readers will quickly find themselves extinct. Credibility is slowly earned, but quickly lost.

The analogy which represents the sort of bias that I am referring to would be if Rupert Murdoch wrote a regular column in one of his newspapers. You just know, no matter how much sense, or how much truth there was in the article, the real issue is how much was left out and how much has been over-emphasized to support his political/business motivations.

An article written on a commercial site like Yahoo, where the commercial aspects are readily identifiable, (eg, the article if helpful, and the commercial bits are separate – like ads) is very easy to interpret.

The lines blur when the objectives of the author are integrated into the story. Ironically, the more skilled the author, the harder it is to make judgments. This skill adds value to the output of the author and may lead to commercial interests engaging this person to help put their point across, without the readership being aware.

For example, Simmaron would not pay Cort out of the goodness of their heart. It would be a commercial decision. It may be as blunt as trying to boost funding for Simmaron, or more effusive as helping to create an environment where ultimately funding/patients are increased. But it is a business decision. And Cort has to earn his money.

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